An acquaintance of ours was watching me give Lizzie her feeding the other day, and when I started to give her medication asked what I was doing. When I told her I was giving Lizzie her medication she asked what it was for.

“Seizures,” I told her.

“I thought she didn’t have those anymore,” is what she said.

I had to explain that while Lizzie hasn’t had any seizure activity in almost two years, it was because of the medication that she was on that she didn’t have them. Not because she no longer has epilepsy.

“I thought you took her off of that medicine.”

I explained that while we took her off one medicine that was holding her back developmentally, we had to replace it with something else to control the seizures. We were lucky to find a combination that works for her. Epilepsy is a tricky thing, and it doesn’t usually just go away.

While some people, like Lizzie, find medications that stop their seizures, they can still build up a tolerance to the medications or outgrow the dose and symptoms can return. Some people have surgery to correct the problem, and some people have a device implanted to interfere with the seizure activity. But these are treatments, not cures. And while some people do find relief, for some people nothing helps.

While Lizzie hasn’t had a seizure in a long time, I will never fully relax and think that she is “cured”. With the amount of brain damage she suffered before birth from her hydrocephalus, and the brain surgeries she’s already had, I don’t doubt that she will always be at risk of another seizure. Saying that Lizzie will never have another seizure is like me saying that I will never have pain from my rheumatoid arthritis again just because I didn’t have pain today. It’s always a possibility. It will always be at the back of my mind. And we will always do what we need to so that the risk is as minimal as possible that she will have a relapse. She may very well be on medication for the rest of her life. But if that keeps her from having seizures, I will be thankful.

So I guess the point of this entry is that just because a person who has epilepsy hasn’t had a seizure in years, that doesn’t mean they are cured. It could just mean that their current treatment is working for them. As the mom of a child who suffers from epilepsy and has seen it at its worst, I have to say, thank God they found something that works for them. And for those who haven’t, I hope that some day there is a cure or at least a treatment that works for them.

For the past few months we have been weaning Miss Lizzie’s phenobarbital. For those who might not know, phenobarbital is a drug that controls seizures. Lizzie has been on phenobarbital since her first seizures in the hospital when she was almost 4 months old. She is now eight and a half and this wean has been a long time coming. We have tried many times over the years, always with the same result. Every time we weaned more than two or three milliliters she would have seizure activity and we’d have to go back up on her dosage. Most people would think that this would be a reason to stay on it, but for Miss Lizzie we had even bigger reasons to want her off of it. You see, every time we would wean Miss Lizzie’s phenobarbital, we would see amazing things. At the age of almost 3 years old, Lizzie sat up unassisted for the first time. Before that, we had wondered if this would ever happen or if it was even a possibility we should hope for. The fact that this magnificent milestone immediately followed a reduction in this medication did not escape us. After that we noticed that Lizzie would gain skills every time we reduced this medication. It was easy to see that it was holding her back developmentally. The problem was we had to find something else that would control her seizures if we were going to get her off the phenobarbital entirely. We started with Trileptal. It helped for a while, and we reduced Lizzie from 22 milliliters to 15 milliliters over a couple of years. However, we then went through a year of more frequent, less severe seizures that no one could find the cause of. So we added Keppra. Then it was finally determined that a side-effect of the Trileptal, low blood sodium levels, might be the culprit in Lizzie’s new seizure behavior, so it had to go. And it went. Rather rapidly actually, because with that medicine Lizzie did not have the effect of more seizures with reduction, but rather less. Next we added Topamax. This has been our wonder combo, Topamax and Keppra. Lizzie has now been almost a year with no seizure activity! Don’t worry, I’m finding something to knock on as I type. Which brings me to the reason for this post: I am both thrilled and terrified to say, that tonight is the first night I am not giving Lizzie phenobarbital at all, in over 8 years! I am thrilled because I can not wait for the possibilities that this may open up for her. I am terrified because like that ratty old security blanket some kids have, we have never been without it since her epilepsy began. I honestly think this is the best thing for Miss Lizzie. Hopefully, this is the end of our phenobarbital journey. Please keep Miss Lizzie in your thoughts and prayers as we complete this process.